Sunday, June 17, 2012

Christy's Courage - Living with EA/TEF

I am sharing a testimony from a Mother whose child has EA/TEF. Meeting this family and our new friendship has reconfirmed for me that the journey I am on is my purpose. Here is Abagayl's story:

July 21,
2010

This is the testimony
of the last 4 years of God’s intervention with my daughter Abagayl’s birth
defect/disabilities.I pray that it will
bless and encourage you as you serve our Lord.

My husband
and I had always felt that if you worked hard, were committed and ethical in
your performance; you would be successful.This is the road we traveled for many years as I climbed the corporate
ladder to achieve the position of a Finance & Commodity Purchasing
Manger.My husband, had worked
in his family business of three generations as a cattle procurement and sales
manager.Basically, taking over the
family business and learning more each day.With this false security we earned in excess of $150,000 a year.As we began to succeed, we sold our small
home and farm and moved closer to my family into a much larger home.This was justified by our growing number of
children.We attended church regularly,
but did not live for God.

In February
2005 my husband came home with the first of many blows to come.His father was getting a divorce and the
family business would be shut down by spring.The following week I discovered what the doctors thought was appendicitis
was actually a new addition to our family.I had been told that I was blessed to ever have children and not to
expect such a thing in the future, so this was quite an untimely surprise.

For the 1st
time in his life, my husband, had to draw unemployment.It seems his profession was not easily
transferred to another.He tried various
sales positions as I struggled with part-time and being bed-ridden during the
last 4 months of pregnancy.It was at
that time that we decided to restart the family business from our home.We were beginning to make progress.

Our daughter
was born premature, 8/25/06.Abagayl was
born 4lbs 15 oz.This was a surprise,
all ultrasounds had showed a normal 7 lb little girl even at 37 weeks
gestation.The pieces began to make
since.Abagayl (Abba) immediately began
to turn blue and was taken away from us to nursery and then to NICU (neonatal
intensive care unit).It was determined
she had a serious deformity.She was
born with Esophageal Atresia with Tracheal Esophageal Fistula (look up EA/TEF
type C).Basically, her esophagus at the
top had stopped growing at 6 weeks gestation.The lower portion attached to her stomach had grown up and attached
itself to her trachea (windpipe).She had
many hurdles to overcome before surgery could be possible.During this time, my company called me and
said, “We need you back here this week or we’ll have to make other
arrangements.”I told them I could not
leave her.At that point, I was released
and started paying Cobra insurance. We
waited the month and then surgery was apparently successful.We gave her the first bottle there and it was
such a miracle.We were to stay one week
in NICU for observation.As the week
progressed I noticed changes in the way she coughed when taking a bottle.They assured me all was fine, and we took our
precious little girl home.

From that
day, the coughing increased and she began to stop breathing and turn blue with
me.I finally convinced the specialist
to take a look.Long story short the
surgery failed and the esophagus had reattached itself to the windpipe causing
the choking.We were only home a few
days.From there we spent the next 2 ½
months with repeat failing surgeries.This time in the pediatric intensive care (PICU).We could not return to the nursery because
she had been exposed to a non-sterile environment.She was put beside children and teenagers
with all sorts of infections.The last
surgery was experimental.The specialist
called on some colleagues and they suggested stitching and using tissue glue to
hold everything together.

During this
whole time, I had been searching God’s word to strengthen and guide me.I played Christian music and encouraged as
many parents and children as I could in the PICU.My husband and I took turns between the
hospital and our then three year old son Austin.Income was forgotten, but we continued to
try.Our pastor had been by our side
faithfully.As I searched, God led me to
John 5: 6-9.Paraphrasing:“Do you wish to be made well?Take up your mat and walk.”I asked everyone of faith what God was trying
to tell me, but they seemed they couldn’t hear.Then, I heard the true meaning by the Holy Spirit.It said, “She is healed, feed her”.I praised God, and said, “Thank you Lord for your
mercy.As soon as the test comes back,
yes, Lord, we will feed her.”I waited
for the world to confirm the promise I had been given.I had never walked just in faith before and I
doubted Him.We went down for the test
to see if there were any more leaks.I
waited so excited to give Abba a bottle again.Her surgeon came in and said, “I’m sorry, the leak is still
present.”I completely fell apart, and
the surgeon left to give me some time.I
cried out to God of His promise and my doubting spirit.My body went limp and I knew I was lost.At that moment the surgeon returned, probably
on 5-10 minutes later.He apologized and
said, “I am so sorry.We have been
reading the test wrong.The leak is repaired;
I’ll go get her a bottle!”Praise
God!The surgeon discussed with me that
we really could have fed her earlier if we had just understood the way her
esophagus had healed.It just looked
like a leak.Again confirming that I
could have fed her when God told me to!Me, of little faith.

We stayed
about two more weeks to strengthen her from all the surgeries, and then we were
home 10/28/06.I have given this
testimony to many.There question was
always, “What would you do next time?”I
always replied that I hoped my faith was stronger now, but secretly I pleaded
with God not to test me again, not my daughter.

We had been
denied Medicaid, financial assistance, etc.All said that Abba’s condition would not last more than 1 year.That was the criteria they felt we didn’t
meet.We slowly paid the bills and
health insurance.We prayed that they
were right and that within a year all would be ok.

We had
speech and physical therapists in the home as she was quarantined for two
years.She could not be exposed to
anything with her weak state.At 9
months old, stage 2 food or any infant cereal, she began to choke and turn blue
again.Many cases of aspiration pneumonia.All tests showed an open esophagus and no
leak.I began to again seek the Lord for
guidance.He said, “Feed her.”Oh no, not this again!In faith, I began to pray before and after
feeding Abba.Before I would ask God
what to feed her and after I would thank Him for allowing her to eat.Only in faith did she eat.Her specialist said I was killing her.That if I continued, she would choke and
there would be nothing to do.I did not
accept this.Her pediatrician agreed,
she was eating the special diet I had created, and was beginning to gain
weight.He encouraged me and I began to
seek wisdom and another specialist.

The diet God
led me to was simple but very time consuming.I cooked everything from potato and onion to minestrone soup.When it was cooked, I then pureed the
contents, put them in muffin pans to freeze, popped them out and put them in a
container.At meal time, I micro waved
the frozen circle added a little broth and SHE COULD EAT!With prayer she could also eat some deli
meat, non-gluten crackers, etc.There
were no rules.Only guidance from above
as to what not to give her.

One day
while listening to 106.9 The Light (Christian music), I heard about Cincinnati,
Ohio’s Children Hospital.The program
was about a girl from Africa that had a life-threatening illness and the
hospital was covering all costs to get the girl to them.End of story the girl was healed.I began to pursue information about this
hospital.Guess what I found?The #1 specialist for children born with
EA/TEF and a special feeding team with members from all disciplines of
medicine.Dr. Kocmond, Abagayl’s
pediatrician, immediately began the paperwork of necessity.Ohio began the red tape of getting approval
from Blue Cross/Blue Shield.I persisted
all the way to court for Abagayl’s Medicaid and at 1 ½ she was approved!I felt a real change was coming!This was approximately February 2008.Months crawled by as the feeding team
called.They were working on everything,
but no luck yet.I cried out once more
to God, You are with us, Is there no one to do your will?”You guessed it, I got the phone call and we
were set for full tests, top to bottom, for July 2008.I had to be patient.I continued home therapy with what I could
read.We continued the feeding process
and were making some progress as more teeth came in.

As we drove
to Ohio I was gripped with fear.The
original surgeon had told me that if any other doctor touched her, the
esophagus could fall apart.He said her
condition was very rare and no one would understand.We were going to be staying a week for full
observation.My pastor even came up with
us.The night before we were to go into
the hospital I prayed through the night.I claimed every promise that could be found and I promised that I would
not forget and I would witness of His glory and mercy.Sometimes, I think God has a sense of
humor.For at the time I said I would
witness of Him, I also said Lord be patient with me, You know me and I am timid
in front of people, teach me how.It was
5:00 am now and I felt I needed to “walk on” with the day ahead.Again, God had a different plan.I could feel and hear him telling me to go to
the front desk and witness of Abagayl’s original healing and feeding
story.I of course told God it was 5:00
(like he doesn’t know time).I said no
one will be there, ok, fine, I’ll go.I
headed toward the desk and saw the shade pulled down and locked.I was very relieved and began to walk on
by.God tugged again and I stopped.From behind the shade I could hear a woman’s
voice singing to God’s glory.I knew I
was in for it then.I humbly went to the
locked, side door.I began to knock,
hoping she wouldn’t answer.No I didn’t
get off that easy.A lady about 55
slowly opened the door.I begged her to
be patient with me.I told her I was
here with my 1 ½ year old to go to a specialist at the hospital.I told her what God had asked and I began my
testimony.Her face warmed and then
began to smile and even to be “lifted” a little.When I had stumbled through my first
testimony, she hugged me and began to speak.She was born with one leg shorter than the other.It had troubled and pained her so.When she was able to work, walking made
blisters on the one foot.She said she
had been down my road.The lady
explained how at one prayer service God had healed her, but she wouldn’t tell
anyone.She was afraid the healing wasn’t
real or that they would think she was crazy.She stood there squarely, looking down at her feet and said, “Have
faith, He is with you.”What I thought
was a test for me was really God’s way of sending me to one who could show me
through their own words that a testimony is nothing more than being honest and
open with people about what God has done in your life.What a blessing to learn you do not have to
be a scholar to encourage others and to have great faith.Amen!

We set off
for the hospital and the first swallowing test came back fine.No restrictions they said.We were very discouraged.She even ate a cookie for them without choking
(her 1st one ever!)The next
day was meeting all the specialist and preparing for exploratory Flexible Bronchoscopy,
Upper Endoscopy and possible dilatation.We were trying to rule out a Diverticulum or goiter.

The day of,
I was able to put Abba to sleep myself and lay her onto the operating
table.This was so comforting to
me.I knew she wasn’t scared without me
now that she was asleep.Then we waited.About 45 minutes later, I met Dr. Kaul (the
#1 specialist I discussed earlier).He
began to draw and explain as other specialists entered the room also.Abba’s esophagus had shrunk down to 6mm from
all the scar tissue at the site.It
needed to be 16mm.All the doctors
listened as I explained how I fed her.They
could not imagine how she could eat and that she had NEVER been on a feeding
tube!Next the pulmonary doctor spoke
up,he explained that she had
Tracheomalcia & Innominate artery compression (or in my terms a D shaped
instead of O shaped trachea and a restricting membrane at one point that closes
her trachea completely).This doctor
began to question me about her breathing and could not believe she had never
had a “trach” (my terms a hole cut in her throat to breathe).They said they had to see this, so they set
up a feeding study.I brought in the
items I pureed to feed her along with some deli meat, etc. and the doctors just
looked.They could not believe that this
was possible!I know how, and I’m
telling you know.

They
informed me that I would have to fly back and forth every other week to have
follow-up stretchings of her esophagus until it held, usually 6 months to 2
yrs.I was told she has extreme GERD
(her flap doesn’t close to her stomach).This was why she was throwing up and choking so much.Also, we discussed trying to remove the
membrane from her trachea to give her room to breathe.In all they praised her pediatrician, my husband,
and I for what we had created for our daughter to survive until then, they just
couldn’t believe it!Dr. Kaul added one
thing….He leaned over and kissed Abagayl and said, “Here’s to your quarantine!”From that moment on he said we’ve got it now,
she’s off quarantine!I cannot tell you
how my mind rushed at all of this and how God had held and delivered us!I knew traveling every other week would be
hard, especially leaving my young son.We committed and the process began.

The weekly
dilatations were from 7/7/08-5/27/09.Abba and I would fly out one morning and back the next afternoon.Slowly she was stretched and her esophagus DID
NOT TEAR but began to open a little more each time.She would eat anything right after a
stretch.It was amazing to watch as
tears would roll down my face.Can you
imagine….a Mother that was told her daughter would never eat past a liquid
diet, and now I’m watching her eat steamed vegetables and fish!

Each time we
went there was always something of God’s presence.Maybe it was me in a baseball cap, exhausted
and Abba with purple eyes that drew people to us, but I like to think that as I
spoke, “Through Christ all things are possible”, He sent his servants.Out of nowhere would come someone to carry a
bag, give a testimony, some taxi drivers witnessed and others had us pray for
them.I can’t explain how God worked
through those months, but He was ever present.To help or to use us.Each person
that saw her would just say, “What is it about your daughter?I can’t explain …”they said.I knew it was always God’s leading for an
open door.As I would began to speak
they would humble themselves from there busy schedule, down to Abba’s car seat
and just touch her.Many business
travelers would gather at the gate with us, me sitting by Abba in the floor,
and they would just listen to my witness.I never asked; they just came from nowhere.One day a young man from baggage helped me
from a taxi at the airport.Again, the
question, “What is it about your daughter?”As soon as I heard those words, I knew.This particular man, helped carry our bags.We thanked and prayed with him and said good-bye.When we got to our gate, he came again and
sat.He began to tell all that would
listen about her story.This was the largest
crowd.He was a faithful Christian and I
was humbled by him as he spoke.Such
love I have seen, but also such hatred as some tripped and bumped over us as we
travelled.For some I could only say a
silent prayer.If only to keep myself
together. When you are walking through a
trial it is amazing to what your eyes can be opened to.My blinders were taken off and can never be
put back.I see the person in a wheel
chair being asked to stand so they can check them in security, and YES I am
there.Just as those who were sent to be
there for me.

Each trip,
we flew on such a tight schedule.We had
to get back so my husband could try to work the next day.He always watched our young son & I took
Abagayl.One surgery Abagayl came out to
recovery.They always called me back
early to help recover her breathing.She
had little quirks that helped her.I
went back and her monitor showed her “stats” the lowest I’d ever seen.We’d done this so many times.We hadn’t changed anything.What was wrong?She couldn’t really wake, her breathing was
shallow, something was different….Four
hours later, several attempts of oxygen, etc., they decided we had to be
admitted to see what was wrong.I
stepped out of recovery to call my husband, “Honey, we’re not gonna make it
home.Something’s not right.I’ll call ya later.”Tears ran down my face and again I breathed
in and out with “All things are possible through Christ.”Right then it hit me.We’re here for a reason, “Lord, show
me.”I went back into recovery filled
with strength.I told the nurse Abba
just needs a little help.I laid my
hands on her and said, What I have I give you….my Faith.Now Abba, let’s wait on God.”I set down in the rocker and the nurse just
kind of looked at me.You guessed
itAbba set straight up in the bed,
reached her hand as far as she could across the recovery room toward a
baby.Abba said with a strong breath,
“Baby Wake up, baby cry!” This baby had been in recovery the whole time we had
and was not going well.His parents had
not been allowed to come back yet and they were working constantly on him.This baby had not cried at all.The baby instantly cried out loudly and Abba lay
back onto her bed.What?How did Abba know the baby was there?The nurse said, “Did she just?????And that
baby just????”I simply sat in my rocker
with my hand on Abba and said, “Yes, she does that sometimes.”The baby’s parents were immediately brought
back and Abba’s “stats” went without hesitation to normal.The young baby and Abba walked out
together!Recovery didn’t try to explain
it; they just witnessed and were speechless.Seem a little far fetched for you?I’m sorry, but as I promised, I will witness of you Lord.I would not dare add nor take away from what
He has done.It is up to you to
discern.We did catch our flight and
made it home that evening.Wow, what if
I’d missed or been too defeated to wait upon the Lord?

May of 2008,
Abagayl’s esophagus held at 16mm.I
looked a Dr. Kaul and said You have given her life!He corrected me by saying, “I am only a
vessel, Life comes from above.”Again, I
was humbled and those words echo each day.We still await the Aortopexy surgery.The CT Angiogram shows there is not enough room to remove the vascular
ring around her trachea yet.We are
waiting.Some children’s trachea grows
even with the restriction.

I am no one;
neither am I worthy to raise such a miracle child.I pray that you are blessed by her
testimony.It did not stop on May
2008.Since our travels, I guess many
churches know of Abba.They pray often.Mothers across the country email me.Many of their children are about 9 months old
and are having feeding trouble that no one can help them or understand.The diet and therapy I was led to use for
Abagayl is being passed on to many.I
get to hear the triumph as the mother’s use the recipes and tools that I did to
help their children.Many are exhausted
as I was and feel alone.What a
God-given ministry.This same diet can
be used with feeding tubes or to prevent feeding tubes.Elderly have been assisted when they’ve been
weak, can’t swallow, or have problems such as goiters.I would have never imagined how fulfilling it
is to see progress and victory, or to simply know that I’m there for those the
system has lost.

Abagayl
turned 3 this year in August.She had
her 1st birthday cake!After
all the hard work to get her able to eat it, she doesn’t even like cake!Life is funny!She prefers cookies!

It is now
February of 2010, Abba has began choking excessively again.I do not understand.I notified Cincinnati Children’s Hosp. and
they are working fast to get us and appointment.I feel far from God as he presses on me that
a 3-6 month term is coming up again.I
do not have the strength to start over with the dilatations or Lord no, not
another complication.I can only praise
God for His past faithfulness and even though I don’t “feel” Him, I must rely
on His mercy. I read my bible and the
words just go void, nothing returning, no presence.I am very confused but I go forward.All is scheduled for April 7.The wait without God’s presence is
unbearable.I know there is a lesson
here so I wait.

In Ohio, we
begin.When surgery is over, I honestly
held my breath.Dr. Kaul came out
first.He said her esophagus had held
mostly and he went ahead and was able to clip a little more scar tissue.There is one big piece left and though he
wants to remove it, he’s cautious.Next
Dr. Boesch tells me that her tracheomalacia is unchanged (I was hoping her
trachea had been able to widen even with the artery compression).Ok……this seemed like excellent news and
Praise God, it is.Thank you Lord.Even though, through works or seeking your
presence, I could not gain access to you.I could not earn your favor.Lesson learned:God loves me
unconditionally.I don’t think I could
have ever accepted this had it not been for Him tying my hands and
thoughts.I could do nothing to persuade
Him for a healing-He gave it freely and holds it still.

I began to
question why Abba could be choking and what was all the loss of breath.What could be going on?Dr. Kaul immediately…. (here it came)….wanted
the feeding team to assess Abba and begin her on a 3-6 month intense therapy
every week.They would be teaching her
to chew properly now that she had molars to grind, writing a medical plan for
school (Her condition changes daily and you must know the full spectrum of
prevention and emergent reliefs.These
go against all natural ways of relieving a choking victim.), working with her
respiratory problems by teaching her techniques to prevent her trachea from
collapsing when playing.

I was and I
am fully on board.I hesitate now at the
3-6 month stay.What will I do with my
son who will start 2nd grade?Will he start school in Ohio?I
begin to pray for another door.This is
where I am today, patiently waiting for God to send help or knowledge of the
next step.Our finances and marriage
cannot endure much more.I give it all
to Him.I know victory is ahead,
whatever it looks like.I am willing.It is now June and I have no idea what to
do.His presence has returned in full
force; I am at peace as He works.Lord I
ask, “Work fast, I need you!”

I am taken to Mark 5:22-43 My version:
Jarius's daughter is very sick. He seeks out Jesus and pleaded with Him.
"My little girl is dying" "Come and put your hands on her so
that she will be healed and live." No longer had he asked this of Jesus
that a large crowd pressed in on Jesus. The woman bleeding of 12 years boldly
fights her way to Jesus and touches the hem of his garment and was healed
instantly. Jesus is distracted from Jarius and turns to the woman. I can just
see Jarius tapping his foot in urgency....My daughter, my daughter. The
disciples argue how can you tell someone touched you in this crowd? (delaying
Jesus more). The woman fell at Jesus feet. (delay delay). After Jesus has
addressed this woman He returns to Jarius but by now Jarius has received the
news, his daughter is dead. Jesus said, “Do not be afraid; only BELIEVE.”Jarius does not lose faith, nor does he
grumble at the waiting. Lord, give me the patience of Jarius. In faith he knew
Jesus would come, and a delay was just an opportunity to witness God's glory.
Sometimes when we are waiting on a miracle, a greater work is being done by
Christ. Maybe it is in us before the full victory will be realized. Or in
someone else that we may be strengthened in our Faith. Let me not "tap my
foot" at the delay, but embrace each day as I await His touch.

I now ask
you to seek your heart.Look for
truth.I do not know if you are the
vessel God has chosen to help us or if He has other plans for meeting our
financial needs.I look to your
discernment.Abagayl has a part-time
care aid from Medicaid.They will not
let me work.I have to be here for all
medications.This is how I have found my
ministry.I know God is faithful to meet
all our needs.We have had our home for
sale since 2008.The economy has not
sent a buyer yet. My Husband's work has
slowed.We pulled all our equity out
when Abba was born to cover medical expenses.

We currently
receive WIC from SC for Abagayl’s pediasure.This is due to her nutritional needs and disability.We have received no other monetary relief
from family or any other source.

I do feel
called to the missionary field.I have
been humbled and learned to walk. God continues to press upon me, “I have shown
you the light, I am the same yesterday as today; Do not hide this light under a
basket.As I search His word, I find
Matthew 5: 14-16 …”Nor do they light a lamp and put it under a basket…”Many times I am reminded of John 9: that ask
..”Who sinned, this man or his parents that he was born blind”I have searched myself over and over and only
can answer the same Neither, but that God would be glorified”I give all the glory to God for the last four
years.I would not change any hardship
for I would not be what He is seeking to create.

There is so
much more I would like to witness of.Many small moments that were woven into our faith; the testimonies of
the servants God sent; the feeding stories of children using this special
technique and diet.God has put on my
heart an end result of writing a book.He’s even led me to have faith and it will be written.The name:I cried Abba.For I cried unto my
Father in Heaven (Abba), and he heard my prayers and has carried me.

We humbly
accept your prayers for God’s provision for His way is the perfect will.

Saturday, June 2, 2012

Hello my name is Christy. Welcome to my blog!

This new and exciting journey for me is driven by my passion to help families like mine who are touched by EA/TEF. Passion has plunged me into creating this blog! I am so excited to share my blog with you and I hope you find it helpful.

What is EA/TEF you ask? Esophageal Atresia (EA) is a birth defect in which the esophagus, which connects the mouth to the stomach, is shortened and closed off at some point along its length. This defect almost always occurs in conjunction with tracheoesophageal fistula (TEF), a condition in which the esophagus is improperly attached to the trachea, the "windpipe" that carries air into the lungs. It is believed that these defects occur around the fourth week of pregancy when the digestive tract is forming. There is no known cause for the defects.

I was born with this condition in 1963 and have spent my entire life learning to cope with and handle the challenges facing individuals living with this rare birth defect.

For many years I have had a calling to do something to help others with EA/TEF, and in March of 2012 I was inspired to start the non-profit organization Christy's Courage. The mission of Christy's Courage is to raise money to support families challenged by EA/TEF by providing emotional and financial support.

Once I found the courage to step into this new adventure the people and resources I needed have manifested in ways I could have never imagined! Living my life with this condition has taken a great deal of courage on a daily basis. Through Christy's Courage I hope to inspire others with EA/TEF to live their lives fully despite the challenges they may face. I have not let my condition hinder me from going to college, having a successful career, and sharing 26 years with the love of my life. I want you to know that anything is possible for your life. All you have to do is dream it and take action! That's what I'm doing now by starting this blog.

In the future, please come back for more helpful information I have to share about life with EA/TEF. I look forward to connecting with you!